Category: endometriosis

I’m not a runner type. There is absolutely nothing appealing to me about lacing up my sneakers and running around town or through parks or along tracks. Running outside? No thanks.

But I am one of those weird class of people who loves running on the treadmill… looooove it. I think it’s because my speed, incline, and rhythm when running on the treadmill always stay consistent, which I don’t get when running outside. I like having that control over the elements. Getting a few miles in before work goes a long way toward feeling healthy and energetic for the rest of the day.

But, endometriosis = inflammation. And inflammation + pelvic organs jostling about when running = pain. I’m so over pain… so over it.

Last summer I began noticing that I’d experience pelvic pain during and after running near my ovulation time. Like, I would step off the treadmill and double over while my uterus screamed at me and my ovary throbbed. Fine: I quit running mid-cycle and swapped it out for the elliptical trainer. Problem solved.

Then the running pain began staying consistently during my entire luteal phase. Begrudgingly, I again adapted. Running became something I’d do only during my follicular phase.

But now running even during the first part of my cycle is problematic. This past cycle I ran on CD 3, 4, and 5. And afterward? Dude. I could barely stand the rest of the day. Instead, I’d be bent over in pain, shuffling around work clutching my uterus and praying for the pain to stop. No more treadmill for Marixsa. But there’s only so much elliptical trainer and cycling a girl can do before her eyes glaze over with boredom.

I miss running. And I’m bent about this latest development in Endometriosis Land.

The good news is that since I’ve begun running and lifting weights, my arthritis has dramatically improved! I’ve had exactly one arthritic “breakout” episode in the last year. It happened only this past weekend, incapacitating me to my bed for a day. I forced myself to work it out at the gym though and felt 100% better the very next day! Score 1!

Anyone other endo sisters out there who experience this kind of pain when running? Any solutions to work around it?

**Sorry for the stone cold silence on this blog lately. I’ve hit a block (again) and haven’t known what to say. Today though, after seeing a whopping 17 posts languishing in draft mode, I decided that enough is enough. Time to end the streak! Here’s a post I started a good 4 weeks ago: **

It all started with the doctor.

Mentally and physically, I had reached the end of my rope concerning endometriosis and pain and infertility. Desperate for answers and for relief from endo, last week month Jake and I consulted with a doctor at a clinic specializing in endometriosis and pelvic pain. This clinic is in another state, doesn’t accept my insurance, and was more than an hour’s drive in thick rush hour traffic. But its promise of hope lured me.

As a clinic specifically geared toward endo sufferers, I had high expectations. Even though I’m aware of the science and the limited options concerning endo and fertility, I just needed to know ONE LAST TIME if there’s something—anything—out there which we hadn’t yet tried.

But? There’s not. Medically, my choices come down to Lupron, continuing to try naturally, or IVF (paid for by my money tree in the backyard, perhaps?).

As compassionate and knowledgeable as the doctor we met with was, she wasted little time steering us toward IVF. Another IVF is a post for another day. With fewer answers than the many questions we’d come with, Jake and I left the clinic reeling from the reality that we’re out of options.

Medically, the odds are stacked high against us.

Maybe I had just needed to reach the end of myself and of my options. If so then, honey, I’m there. Actually, I’m somewhere beyond “there.”

The thing is, this appointment wasn’t especially different from any of the many other consults Jake and I have attended. But we had gone to this appointment in a last-ditch effort for help and left feeling deflated.

With nothing except time to talk during our drive from the clinic, Jake made one very excellent point: the only real decision to make is for us (read: me) to surrender this fertility business to God.

Now I don’t like surrender; I like control. I like to be doing something, forward momentum… even if what I’m doing is spinning my wheels. At least I still have the illusion of control. But this whole baby thing? It’s laughable to consider that I’ve ever had any control.

I’m not proud to admit this, but my initial reaction to Jake’s suggestion of surrender was anger, denial, and refusal to submit. I felt my human pride rising up, and I wanted to rebel at the world. The unfairness of it all—denied having a mother, denied being a mother—felt just too, well, unfair. Now to be asked to surrender my feeble attempt at control? I don’t want to!

Plus all the losses. And all the surgeries. All the money. All the doctors. For what? For a disease which no one can cure, understand, or even properly manage. For years gone by and no pregnancy, no baby. For an endless money hole.

Enough. I can’t do it on my own.

Okay, I will surrender. Even if at first it’s a slow takeoff. I’m confident that my heart will fully get there, bit by bit; it takes time to soften me up. God has allowed me to reach the end of myself so that I can lean 100% on Him. Do I trust Jesus? Really trust Him??? Will I surrender this thing and vanquish my self-deluded control?

What does “surrendering it” look like? For me, surrendering looks like I put my whole trust in the Lord to heal and repair my body… even if it’s for a disease that I can’t see. It means I remain full of hope for our future family when all looks hopeless and I desperately want to quit. Because the truth is, I’d been considering giving up lately. It means that the slim, couple-of-percent chance to someday naturally give Jake a baby becomes an absolute given in my mind. It means I rest in God’s timing, because it’s always so much better than my own timing anyway.

My soul sister of the bloglands, Lisa over at Bloomin’ Uterus, has nominated me for a Blogger Recognition Award. My mission for this challenge? Tell you how The Endo Zone blog began.

It’d be pretty awesome if I had an inspiring backstory to this ‘lil blog’s conception… but, instead, it was just one of those thangs: Marixsa felt lonely in TTC land. Marixsa discovered fertility blogs. Marixsa likes to write. Marixsa started her own fertility blog.

The Endo Zone is about, well, endometriosis. TTC. Life. Family. Pets. Loss. Opinions. All of the other parts that make up my life, minus my true identity.

I do have one small confession to make about this blog: I am utterly terrible at naming things. The worst. I often wish that I had thought of a cleverer title than The Endo Zone. The title is a play off of “end zone,” although I’m the least enthusiastic football fan you’ll ever meet. Hence, a blog about the endometriosis zone, whatever exactly that is. Someday I’ll get around to renaming this space.

As for backstory, I was diagnosed with endometriosis in 2010, but I’m 100% sure it’s been there since the ’90s. Most days I forget that I’ve a history of endo: the pain, the infertility, the mega cramps, the scary clots, the pooping pain… I don’t know any differently. But endo is not something I embrace or call my own. I have a history of endo; I do not claim it, want it, or believe that it will get the better of me. My life in no way revolves around a disease that God is so much bigger than.

Starting this blog has allowed me to connect with an amazing array of women, literally from all over the world. It’s been a privilege to meet women on here who I’m proud to call my friends. My only regret? I wish I’d started the blog sooner.

Here are my nominations of fellow bloggers who I find incredibly inspiring in their own ways! Tell us why you started YOUR blog!!

**originally posted on December 15, reposting today because, well, 2017’s end is imminently looming. Praise God for a new year!**

Somehow—in a blur of time and events and dates—another year is quickly drawing to an end. I’m kind of stunned to find myself writing about 2017 ending, and so soon it seems! And I’m kind of [read: very] disappointed to find myself still blogging about fertility stuff as we move into another year. Even so, I’m immensely grateful for God’s goodness and protection during this year. Fertility issues are just one part of the whole of my life.

So for those and myriad other reasons I can’t write here, I’m okay and moving still toward a deeper peace. I continue to have moments of anger, frustration, and sadness about our inability to conceive. Some days I can’t sense the light; I can’t see how this infertility will ever resolve; I feel my faith weaken. But, overall, I am sustained by God’s peace and a strong sense to continue to wait patiently… although I’m notoriously impatient. Character is being built here. The process is uncomfortable.

As I look back over the year, here are the highlights of 2017 when it comes to our TTC sojourn, good and bad:

SUCCESS: A successful laparoscopy in March that opened my Fallopian tube and cleared away lots of adhesions.

FAIL: Why, in my mid-30s, do I still have monstrously painful periods? I thought that period pain decreased with age? (Actually, when I think back to my teen years and early 20s, my current period pain looks like a walk in the park.) I still have to take prescription painkillers and spend a day or two in bed each month. So, this mini-rant counts as a fail.

FAIL: Perhaps the biggest fail of them all: still not pregnant. Yeah…

Our 2018 fertility plans remain open-ended. Jake and I are in preliminary talks about going another round with IVF. I’m quasi open to it; he’s much more cautious. We totally cannot afford IVF and if we do decide to do it, I’ve no idea where the funds will come from. Like I said, it’s preliminary.

I’m in the process of changing my health insurance over to Jake’s plan. I found a clinic that—believe this?—SPECIALIZES IN ENDOMETRIOSIS (huzzah!). And when I say specializes in, I mean that endometriosis is ALL THEY DO, all day. The entire office is dedicated to patients suffering from endo. Once my insurance has been squared away, I plan to make an appointment. I so need a doctor who will actually help me, and I’m hopeful that this place will be the answer. It’s an hour away and 90% of the drive involves major congested roads but I don’t even [mostly] care.

Even though it’s two-odd weeks til the new year, I’m pleased to see 2017 on its way out. Never liked the odd numbered years as much for some reason. I’m ever hopeful that 2018 will usher in new beginnings in our fertility sojourn.

How has half of March slipped past without my even mentioning that it’s Endometriosis Awareness Month?! I know, I know: Endometriosis Awareness Week has long since passed us by with no mention by yours truly… what can I say? I’m kind of a slacker. But surely I won’t let a whole month go by without mentioning it!

Since there’s still a decent amount of March left, check out endometriosis.org’s list of worldwide endo events taking place this month by clicking here. Those of you in other countries can click to find an upcoming event near you (or hopefully near you!). I have no affiliation with endometriosis.org; it’s just a website that I think is very informative about endometriosis.

You won’t find any lists of endo facts or stats on my blog: I leave that task to more qualified sources, like the site I just mentioned. In fact, I don’t really talk much about endo on The Endo Zone… shame on me! This blog is more about how endometriosis has affected my fertility and follows my quest to not allow this disease to rob me of having children. I’m not an endo proponent or advocate by any means. Instead, what you will find here is one woman’s account of living with endometriosis and, in many ways, living around endometriosis.

But since it is Endometriosis Awareness Month and since this blog is called The Endo Zone, I thought I’d take a minute to tell my readers how endometriosis has affected my life. So here we go!

Topping the list would be my endo surgeries, but they only happen every few years; that still leaves my day-to-day life with endometriosis. In that sense, I’m one of the fortunate ones. It’s so true that one’s stage of endometriosis doesn’t correlate to her pain level: for instance, I have severe stage 4 endo. Yet I don’t suffer from the daily debilitating pain that another endo sister with stage 1 or 2 might live with. Instead, endo affects my daily life in the form of heavy menstrual cramps, mega big period clots, and daily ovarian pain. Oh, and 60 months’ worth of infertility… lest I forget. Blocked fallopian tubes, adhesions, and adenmyosis are all parts of my endo experience, but I can’t actually feel those things. So while they might affect my life, if it weren’t for surgeries then I’d probably never even know these things existed in my body.

And that’s what endo is: an invisible illness. A real predator, but an unseen one. It lurks and steals, and is—incredulously enough—often misdiagnosed.

While endo awareness and research are definitely important, I don’t define myself by having endometriosis. That’s part of the reason I’ve never before posted about Endo Awareness Month. True, I suffer from endometriosis. But it’s such a small part of who I am. I believe that God is a Big God. So I try not to get caught up in the diagnosis and, instead, I like to focus on His promises of restoration and healing. Now I don’t discredit all the hard work and effort that others have made in getting this disease onto people’s radar… And I hope that I don’t come across as unrelatable… It’s just that I believe this diagnosis is something which, in the long run, will not conquer me.

Or any of us.

Finally, I can’t finish this post without mentioning my BFF of the blogging world and fellow endo warrior, the fabulous Lisa of Bloomin’ Uterus. If you have even a speck of endometriosis in your body and aren’t already following Lisa’s site, run—don’t walk—on over there by clicking here.

Since I didn’t have anyone to take my pic, I had to use the bathroom mirror and the writing is backward! It says, “Endometriosis Awareness and Support,” followed by the site name. Good shirt for a good cause!

It’s so strange to be having a normal cycle: I almost don’t know what to do with myself. What is this for-real cycle that I seem to be in? The real test will be when (well, if) I ovulate this cycle—which is scheduled to happen this weekend—because ovulation has been so hit or miss for me this past year. What else is a girl to do, except to order another 50-pack of cheap Wondfo OPKs and continue temping for a temperature spike? The concept of no intermenstrual bleeding, on-time ovulation (without weird luteal phase lengths), and the same 20% chance of pregnancy as the Fertiles have is kind of mind-blowing. And exciting!

My first period post-op arrived right on time, and I ended my surgery cycle on a much-needed positive note of a normal 27-day cycle. My period itself was not so normal, as it came in fits and starts and lasted less than three days. I experienced far less cramping than usual (hooray!); in its place though I had scary insane uterine pains. It was as if someone were mercilessly jabbing at my uterus with an ice-pick and it lasted all day long for several days. The ice-pick stabs began to retreat on cycle day 3 and I haven’t had to take any narcotic pain meds since then.

As for recovery, all continues to be well (stabbing uterine pains aside). I ended up being allergic to the surgical glue which was used to close my incisions. I’m basically allergic to nothing, so I was totally not expecting this. The allergic reaction is ongoing and unrelenting: think raised, angry red bumps, swollen skin, and ceaseless itching. Hydrocortisone cream has been my newest BFF; we go everywhere together these days. Although I’ve removed all of the surgical glue, only the passage of time will clear up the allergic reaction… which cannot happen fast enough.

So yes, it’s an unfamiliar feeling—in a good way!—to be entering into a cycle right now knowing that I could conceive this month as a fact. Not as a slim chance or as a shot in a dark: an actual, bona fide chance! No more ambiguity, no more wondering. No more trying to ignore the deep down sinking feeling that something, somewhere is physically very wrong and my efforts are probably for naught. I’m still adjusting to the idea that my pregnancy chances are now normal… It’s been a long time coming.

Normal chances or not, a pregnancy now would be still a miracle of sorts in my book, since there remains the matter of my somewhat inhospitable uterus for an embryo to contend with: (1) I have a moderately arcuate uterus, which increases the risk of a second trimester miscarriage; and (2) Dr. Din is pretty positive that I have adenmyosis going on in my uterus, in addition to the endometriosis outside of my uterus (I’m not sure what this means for me going forward?). Oh yeah: and the risk for ectopic pregnancy is much higher following procedures that unblock the fallopian tubes, so I’m not yet out of the woods. I don’t mean this to sound pessimistic. These are just real hurdles I may encounter, and I have to be aware of them, both feet in.

Migravent (unrelated to fertility; this is a mineral supplement that’s supposed to help reduce the frequency of migraines. I average 1 migraine every 2 weeks, which usually puts me out of commission for an average of three days. We’ll see how this does…)

The other day I posted here about my experience with my most recent surgery for endometriosis. Here’s the second half of how things went:

For background, I was diagnosed with severe stage four endometriosis during my two surgeries that preceded this month’s surgery (these were surgeries # 3 and 4). In both of those prior surgeries, the operating doctors each separately told me that I had the worse case of endo they’d ever seen. That’s not exactly bragging rights… who wants to hear that they have the worst case of [fill-in-the-blank medical thing]? During surgery #3 my severe endo, along with several chocolate cysts, were all removed. Thirteen months later, during surgery #4, all the endo had returned, and then some. Organs that weren’t even adjacent to one another were adhered together. Bad stuff.

Surgery #4 took place five years ago, which is the longest I’ve gone between surgeries. Since then, I have been TTC and have experienced near-constant ovary pain. Jake and I have not achieved any [natural] pregnancies in the five and a half years that we’ve been trying for a baby, nor has my ovarian pain ceased in that time. Then, for several months in 2016, I was having unexplained intermenstrual bleeding. Sex has also been quite painful for me these last few months, mainly around my cervix.

This time around, during surgery #5, Dr. Din and I were prepared to find lots of endometrial implants (i.e. endometriosis), some burst cysts, multiple adhesions, and maybe even some uterine polyps or fibroids thrown in for good measure that might explain my mystery bleeding. But not so!

Here’s what Dr. Din did NOT find:

No burst (or whole) cysts

No fibroids

No polyps

No endometrial implants

Take a look at that last one again: no endometrial implants. That means I had NO ENDOMETRIOSIS!!!!!!!!!!!!! None. Dr. Din said that possibly there’s some microscopic endometriosis going on, but nothing severe enough that it’s visible.

How does one go from severe stage four, rapidly recurring endometriosis to no endometriosis? There’s just not an explanation. The endo should’ve returned with a vengeance in these five years, just like it returned with a vengeance in the thirteen months between surgeries #3 and #4. My only explanation is prayer. I cannot be convinced otherwise. I believe that God has kept my endometriosis from returning, and I am so very thankful.

Here’s what Dr. Din did find:

Pelvic Adhesive Disease: Adhesions had stuck my colon to my uterus. The colo-rectal surgeon who was en suite during my procedure removed these adhesions. Dr Din explained that my pain during sex was as follows: Penetration was hitting my cervix, which was then pushing on the adhesions, which were then pushing against my uterus and colon, causing a big messy ball of pain. Yikes! This also explains why I’ve had painful bowel movements for, like, a year.

Ovarian Adhesions: My ovary was encased on all sides by adhesions. Dr. Din described it as being wrapped in layers of Saran wrap. These were all removed.

Fallopian Tube Blockage: Here’s the biggie: My fallopian tube (I only have one tube and one ovary) was completely blocked by adhesions where the tube meets my ovary (distal); it was not blocked where the tube meets my uterus (proximal). This explains why I haven’t gotten pregnant: my bodywas literally unable to become pregnant. Although I’ve been somewhat regularly ovulating, the egg couldn’t penetrate through the dense adhesions. Meaning the egg couldn’t even get into my fallopian tube for a chance at fertilization. This was a total surprise, and there’s no telling how long it’s been blocked. Dr. Din used a procedure called chromotubation during my surgery—which is like an HSG, only better—to verify that I have no further blockages. My 2015 HSG showed that my tube was clear, but Dr. Din chalked that up to a false positive. I’m not so sure about that, and plan to investigate it further.

At least as of this moment, I am fully fertile! That is what I choose to focus on. There is absolutely no reason why I cannot get pregnant on my own for the time being. Yes, there is a very distinct medical possibility that the adhesions/blockages will return in time. Will it be a few months? or a year? No telling. Removal of distal fallopian tube blockage unfortunately has a pretty poor success rate when it comes to keeping the tube open in the long run. But I’m believing for the best; God is on my side! And in the meantime, I’m studying up on different methods and success rates of FT blockage removal.

Besides, it’s not like I can’t have another surgery in the future. In all seriousness. Part of me has already begun prepping for that possibility. I will do whatever it takes to keep my remaining reproductive organs inside my body where they belong.

As far as recovery goes, I have no complaints. I had surgery on a Wednesday and went back to work on Monday. The five days in between I took it very easy.

Pain has been minimal. Sometimes I feel a deep, organ-y pain in my uterus and tube that no medication can touch. And my ovary still hurts exactly like it did before; I’m hoping that will go away once I’ve healed more.

I ended up with four incisions instead of the three that Dr. Din promised; three of these incisions were made over my existing scars, and the fourth is new. The new incision is above where my belly button used to be. Dr. Din took a peek under the hood at my umbilical area and reported back to me that the umbilical mesh which I had installed during my 2008 surgery (surgery #2) is holding up well. I’ve been having umbilical pain the past few days—probably from that area being messed with—but it’s quieting down now. One of my incisions is a bit weepy and sometimes bleeds, so I’ve been keeping it covered lately. Otherwise, all’s been well.

Here’s some pics of the progress I’ve made, from days 1 – 6:

Oh, and I finally pooped today! That only took a week. Ugh. Surgery really backs up the pipes. It still hurts some to go, but that’s because human colons don’t much enjoy being handled and prodded. My pooping pain shouldn’t last long. Aren’t you so pleased that you read down this far?! If WordPress had emojis, I’d absolutely insert a poop emoji right about now.

On surgery day I forgot to remind Dr. Din to remove the epidermal inclusion cysts on one of my scars. Grrrr… That might be something a dermatologist can take care of for me in the future, so no real worries.

My post-op appointment isn’t for another six days. Hopefully I’ll take home some gory surgical pics from the appointment to share with you all.